Help and Hope for the Glut1 Deficiency Community

KetoCal Webinar with Stacey Bessone and G1D Foundation President Jason Meyers

September 20th, 2017

Join KetoCal on October 5th for a free parent Webinar on adherence with the ketogenic diet! Learn tips for staying on the ketogenic diet from dietitian Stacey Bessone and Jason Meyers, a parent of a child on the ketogenic diet. Register now! http://bit.ly/2fmhjKl

Rebbecchi Family Video

September 12th, 2017

  The second video in our series is ready – a story that highlights some of the early signs of Glut1 Deficiency and the tremendous difference a diagnosis brings. Sincere thanks to the Rebbecchi family for sharing their story and to Rob Rapaport for putting it together on film. Rebbecchi Family Video

Summer 2017 Newsletter

August 27th, 2017

The most recent edition of our newsletter is available at the link below. There are lots of updates to share! You’ll find conference resources from our gathering last month in Nashville, plus information on plans we are already making for our next conference in 2019. There are also some details on new research projects, family news, G1D Foundation news, and some information on our plans to…

National Walk for Epilepsy – Join Our Team!

August 22nd, 2017

The Glut1 Deficiency Foundation will have a team for the first time in the 12th Annual National Walk for Epilepsy. We’d love to have you join us! When:  Saturday, April 14, 2018 Where:  The National Mall in Washington, DC Why:  Educate and raise awareness of Glut1 Deficiency in the epilepsy community The National Walk for Epilepsy is a unique and inspirational experience, and we are pleased…

Saponaro Family Video

August 20th, 2017

Meet the Saponaro family – a story of determination, hope, and the life-changing power of a diagnosis.   This is the first in our series of family video stories.  Many thanks to Frank, Donna, and Amanda Lynn for sharing with us, and to Glut1 Deficiency Foundation board member Rob Rapaport for putting together the video.   Saponaro Family Video  

new research opportunity – negative genetic testing

August 14th, 2017

New Research Opportunity Dr. Umrao Monani, a researcher at Columbia University Medical Center, is interested in learning more about Glut1 Deficiency patients who do not have an associated gene mutation. Studying the causes and mechanisms of the disease in these patients will lead to a better understanding of Glut1 deficiency and inform future treatments for all individuals afflicted with the disorder. If you would like…

new blood test for Glut1 Deficiency

August 14th, 2017

We were very pleased to welcome Vincent Petit and Luc d’Auriol of METAFORA to our conference in Nashville, where they shared some information on a new, simple, and quick blood test they have developed to test patients for Glut1 Deficiency.  We have a Q&A to share with more information at the link below. METAFORA Q&A

Spanish interview with Dr. Juan Pascual

July 25th, 2017

  Vivian Mathis, Glut1 mom, journalist, and blogger, sat down with Dr. Juan Pascual at our conference in Nashville recently.  Vivian compiled a list of questions from families in Latin America and Dr. Pascual graciously agreed to take part.   Dr. Juan Pascual interview   The Education Committee is working on an educational video created from professional and family interviews and footage at the conference.  We…

Glut1Mom.com conference blog report

July 24th, 2017

  Vivian Mathis, Glut1 Deficiency mom from Argentina, has a blog called Glut1Mom.com.  She shares lots of helpful information and tips in Spanish and helps provide translations for the Glut1 Deficiency Foundation.  Vivian did a story on her experiences at the Glut1 Deficiency Foundation conference in Nashville recently, and we wanted to share.  You can find her original post in Spanish here.   The English version of…

newly updated and redesigned educational brochure

July 21st, 2017

We are pleased to introduce the second edition of our educational brochure.   Download a PDF here or email us to request professionally printed copies.